That is an interesting way to describe it!! I tend to tell people that my brain is basically on hyperdrive. So when it interprets pain, fatigue, sadness, irritability, etc it does so at 110% all the time. And then when I breakdown my individual symptoms, I explain my physical pain as the day after doing an intense, full-body workout after not being active in years. The brain fog/fatigue is like taking Benadryl, Nightquil and a Tylenol PM and then trying to do statistics. The emotional issues are like your worse depression, anxiety, irritability and PMSing all at the same time.Of course, they'll never really understand it completely, but I think I usually paint a good picture of what I'm dealing with on a daily basis.View Thread

I am still in more pain than usual. I have so much yard work to do and know I can't do it today. I will settle for a walk and a few inside projects.

MiMi - I am still in pursuit of something that will help chronic fatigue. I have done some DNA tests and need to set up a Dr.s appointment for results. I do hope there will be some help found in the tests.

Nancy - enjoy your day. Making pies, and lists of things that need done. You will be busy.

Lou - sounds like you need a couple of days off work to get things in order. I hope you find some time to relax and have some fun as well.

Cory- glad you had a good Monday. Distractions are good to keep the mind off of our pain issues. Sounds like you have that tool mastered.

Linda - sorry to hear of your friends possible cancer. I hope she finds out that is not the case.

Georgene,I too waited a long time to add the antidepressant, I always yelled no playing with my brain chemistry! I am not depressed and I am low only due to pain.

NOW: I have learned in my reading that we are brain chemistry challanged. They use it to raise seratonin and norepinephrine to help for the pain sensation and the feel good chemistry helps lift us to have a day. It is not a magic pill I wasn't so much better.

Well, let me correct that. Cymbalta near did me in, I developed seratonin syndrome. But Savella 12.5mg the lowest dose at once a day has been the bow on the box for me. I started with the titration pak and ran into alot of side effect with sleep, B/P,grinding my teeth and not sleeping as it was making too much norepinephrine for me. BUT I WAS PAIN FREE...I also was running around like a lunatic.

We pulled back to just 12.5 that I can take 2 times a day if needed or just once and just once is enough. Come spring with the projects I will go to 2 for a bit. The special thingabout savella is it is the only SNRI that increases norepinephrine 3 times that of seratonin (which seratonin i didn't need futz'd with). So beter than cymbalta for me.

We are all different remember and the trial and error of meds is a pain to get through. Give 60-90 days to see if something helps you. Except if the side effects are too much. I knew I had too much on board and titrated back down and we agreed on where I am. I also changed her way of prescribing, no titration paks anymore. She orders the dosing slow to rise due to arrythimias and side effects in the older patients or those prone.

Having that on board for you at work is better than pain med. careful with gabapentin as foggy and drowsy is an issue with that even at 100mg a night. Like I said, start the trial meds when you are off and can see how you respond.

After a very painful weekend, today was easier. I got the house cleaned up by my young gal--such a blessing! I wish I could pay her more, she is well worth it.

This afternoon DH and I returned our DD's computer that DH updated for her. We got in the middle of our GS's grand drama when he got small rocks in his eye. He is 3 yrs old. Trying to flush out his eye took 2 adults! Oh the howling!

We then got a few things at Home Depot for mini fix-it projects, and stuff for the garden--good thing it is large enough to plant me if it gets to be too much.

My knee is swollen and painful. This is a life-long battle. I do not want a knee replacement at this time. I'll just pamper it as much as possible. Sometimes it takes 6 months or more to heal.

Glad to hear everyone has something to figure out in their lives, I'm not the only one to be challenged by my own body!

Hello whiterabbit and welcome. MiMi in NC. It is my guess that some days the FM pain will STOP you right in your tracks....It does take time and effort to figure out just how to cope with this mean and ugly illness. We, FMers, must learn to listen to our bodies and adjust to whatever it takes. We also have to learn to say no, when we are not up to doing whatever. This is not always an easy thing to do.....but I can tell you this much that if and when you push yourself to the limit or overdo.....you will surely pay dearly for doing so. Sooner or later you will figure out what you need to do and then you will learn when to slow down or stop before you get to the point of no return.

I hope you will check out the info here under *tips* and *resources*....be sure and review the *member toolbox* and *Dr. P's discussions* too. I am sure you will find lots of good tools which might help you cope better.

Vitamin D. Has your doctor checked yours yet? IF not then perhaps you need to speak to the doctor the next time you have to go in. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well.

There are all sorts of good *tools* that will help you cope better. You should also learn how to pace, pace and pace even more.

Living with the wrath of the dragon, aka FM is a vicious cycle for most of us.....some days will be ok and others not so much (on these days remember that this too will pass).....tomorrow hopefully will be better.... Sometimes you have to *pick and chose* what you need to do....(not want to do, but need to do)

I think the more you research this illness, the better you will understand it.

I hope you will continue to post and let us know how things are going for you.

Hello futurepcp....and welcome. MiMi in NC. Yes....this is true. I was sick for over 10 days and I still have a cough which the doctor told my DH that the cough might last for up to 4 weeks or longer. I got stressed which caused me to get sick and then I had to get a root canal and had complications with that as well. Not a good thing at all.

I think we, FMers, just get sicker than most people do.....I guess our bodies are *tired* to begin with and when we have additional health issues, it affects our bodies even more.

I think this winter has been the sickest I have been in several years. NC did not have much snow in my area but we sure did have a *bitter cold winter*. Perhaps the weather was a factor as well. I know when it is damp and/or raining.....I have higher levels of pain.

I have to use eye drops every day for allergies. Last year I had to take medicine for it too. I have not gotten that bad yet.

I hope things will get better for you. We have to keep our guard up if possible and be on the look out for all kinds of changes. We have to learn to listen to our bodies and try to stay away if you know someone is sick or not feeling well.

I have a zip front sports bra that zips in front and I love it. Can't find them anymore... these were New Balance. I need a plus size because of my pain and lack of being able to work out enough.

I would love to find a zip front in plus size. Maybe we should all contact New Balance to make them again and show a huge interest we can get them again. These are the most comfortable I have ever had. No wires/front close/stretchy/adjustable with shoulder straps/adjustable around ribs

It iss a toss up for me. 1. I'm tired of being LABELED as a "pill head" by the pharmacy technicians and sometimes the pharmacists themselves because of the pain meds I take and how they talk to me.

2. I still work full time (and its very hard!) and my boss makes snide comments if I come in late on a Monday or if I can't come in on a Monday. Today it was something like.. did you plant too much this weekend in your garden?..or just the Monday morning blues?

I replied that I had felt this level of fatigue since all day last Friday and the entire weekend.

DO THESE MORONS THINK I SUFFER MON-FRI ONLY?????

I don't just miss on Monday, but there seems to be an issue with it. How about the fact that I can rest at home on the weekend and Monday is hard because my body feels better resting and Monday is harder to make my body move and go, go, go for the workweek again!?!?!

If you have not tried MyPainAway Fibro Cream, you do not know what you are missing. I tried this cream on a very bad day, had my daughter massage it in my back and OMG, it was the best thing since colored TV. lol. Seriously though, this cream has no side effects and I could actually feel it work after about 15 minutes. From my understanding it is only sold at CVS or online. I got mine for $13.99 and when I went online there was a $2.00 off coupon.

I'm telling you I have been able to decrease my pain medicine and muscle relaxer use, and have had no side effects whatsoever. My daily activity level has increased and I have been sleeping much better at night without the sleeping pills I was prescribed.

This stuff has been a Godsend to me and I hope anyone else who tries it has as good of results as I have. I can't wait to go back to my Dr. to tell her about it.

Hello and Welcome 1Nancy. I am so glad you found us here. This a great site to come to for support and understanding. A whole community of caring people here who make the fibro journey we are on a bit better.

There is also so much information here.. if you have questions please feel free to ask them. Fibro is not a one size fits all kind of illness, but rather a collection of them and some things work well for some, not at all for others, so many of us post what is working and not working.

I hope that you come and visit each day.. join in on Roll Call.. share how you are and perhaps join in on post that will be helpful to others.

cece, Mimi and all. I too have had to be on prednisone and Oh My what an energy booster it is! But given to long, in high doses Oh My what damage it can do to the body!

My BFF who is in end stage Lupus had been given it in high doses back to help with her pain when she first was DX'd with Lupus. She said she was so stupid about it. Looking back she'd have told them NO Way.

She said the side effects are terrible.. hair loss, weight gain or loss, vision issues and addiction to the steroids themselves. She has tried for years to get off the daily dose they have prescribed for her and every time the withdrawal from them have made her so sick she has had to go the ER for help.

So she stays with them, Over the years she has been given more and more, higher doses to help with the pain, she is bedridden for the most part now and what the steroids did to her bone mass is sad beyond words. She breaks bones just moving, walking or sitting. Forget about coughing.. She has cracked ribs and spin disc.

She has lost 5 inches of height over a 5 year period. and now is worried about me even taking small doses at 3-6 month intervals for the migraines. Knowing this I now want off the shots for my migraines or will try to get the shots once or twice a year. Serious stuff steroids..

Hello marie and welcome....MiMi in NC. 5 years without knowing what is going on with your health issues....what a shame and disgrace that it took the doctors so long to get to the root of your problem. IT STINKS* But to be honest with you....this has been the *normal*. I do think though that doctors are beginning to pay more attention....and hopefully they are learning more about the wrath of the dragon and how to point us FMers in the right direction of at least lowing our pain.

I did want to tell you that there is now a blood test for FM....and it does show that we have this god awful illness to deal with every day. BUT the test is quite expensive and insurance companies do not pay for it....(I think I read that it cost around $700 or so)

Moving forward now.....and you have found this support group. You will find lots of very good *tools and tips* here that just might help you cope better. So be sure and check them out. Everyone must do a *trial and error process* though to figure out what will or will not make a difference. It is normally a *combination of tools* which will work. But we are all different so you have to decide which *tools* you will try and try to weed out those which do not help.

The wrath of the dragon creates a *vicious cycle* for a lot of us FMers. Most of us are never without pain. BUT there are ways we can reduce our pain levels. You will still have good days and not so good days.

Doing research on this illness and meeting others who are facing it each and every day will indeed help you understand how you can *help yourself*.

It is sad that so many people have no clue what we face and deal with each and every day. No one truly understands unless they, too, suffer from it. Family and friends have no clue and most doctors have no clue either.

I hope your doctors checked your Vitamin D level....if not, then the next time you have to go in to see them.....you should ask them about this. Low Vitamin D can cause additional pain and it can also affect other illnesses as well. Do your own research about this so you will understand just how important this can be.....especially for people who suffer from chronic illnesses.

Stress is indeed a HUGE factor in trying to get our pain under control. The wrath of the dragon feeds off of stress so it will be good if you can learn how to keep your stress as low as possible.

Learning how to pace, pace and pace even more is very important. Although this sounds easy enough to do, it is very hard in the beginning. You have to tune in to your body and then do accordingly.

As for the chronic fatigue.....I wish I had something to share with everyone about something that would help this....but I have NOT found anything yet that has made a difference in mine.....but I continue to keep researching....there must be something somewhere that will make a difference.

Hang in there and keep posting here.....I am sure that things will get better for you soon. Know that you are not alone in this struggle. And we are here to help you any way we can. This is a good group of people and you will find some good *tools* that will make a difference.

I heard once that gardening is good exercise. My garden didn't get that notice. I guess I didn't either .Pacing I am. Hurting, you bet!

This is my first attempt at a veggie garden in 2 years; last year I was having and rehabbing from surgeries, the year before I was in too much pain. Perhaps I can no longer do this. Of course it's not the only thing I'm doing outside-it is spring-weeding ,trimming ,etc. And it's too warm--85*! It should be 10* cooler at least.

Okay, I've had my cry out.

Cory, I'm so glad things went well at work and for the time you got to spend with family.

Hello lambchops and welcome. MiMi in NC. I wanted to post a reply to your comment about Vitamin D and not being able to absorb it. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. I would encourage you to do some research on just how important Vitamin D is. I think there are lots of people who have issues with this being too low. Some vitamin store carry liquid form. Perhaps you could try that. I also think you have to make sure you eat when you take this.

I will say this that when I got mine checked....it was 12 and I was also given a prescription Vitamin D. I took what was in this and the doctor told me the same thing to take otc Vitamin D. I then did my own research on this and found that when a person's D get really low it is very hard to bring it back up to within the *normal range and keep it there*. I think there were several of us FMers here who has found this to be true. I now take a multi Vitamin with extra D....and it provides 4000 iu for me. My level finally got back up to 42 which the doctor said that this was on the low side of normal.

I do encourage you to research this and then decide, perhaps along with your doctor what you should do.

I do hope you will also check out the *tips* and *resources* here on this site as well. I am sure you will find some good *tools* that will perhaps help you cope better.

hey Lisa I am thinking they are trying to decrease their billing department. Having you pay up front and then you* wait for the money is a turn that a few doctors have done in our area. It is not illegal but they lost alot of patients who can't pay up front.

Calling the insurance company is a good move but in NY they have a right to change their billing concept. A contract with the insurance company such as taking **assignment** is placing them in the waiting game to be paid. They cannot bill you over the co pay

Sorry this is happening to you. I just pay out of pocket so I don't have issues.my injections are 100.00 and she put my steroid ones through insurance.

Good luck, again sorry for the stress.Oh, also look at past EOB's (explination of benefits) and see that they got 800.00 from them. That is illegal to charge higher than the contracted price. The wish price and the actual price is always different.

Welcome to the Fmily and glad you are using the board for all it's value. As mimi said, look for the Members Toolbox in resources and check out tips as well. This takes time to tool just right and be better.

A few ah-ha moments i had when i joined 15 years ago and it has been a process as I go along still. I am as tuned as I can be but I know I can be in a better place if the human factor of me stops getting in the way!

I wish you well, stay and post and help us help you to be better*. We will be happy to help you on the road to better.

Yes it is tough and a monster, we call him a dragon....and he bites for sure.

Please look at the tips and resources to the right and in resources is the Members Tollbox. Look in there for many tricks we have learned. Most are on a muscle relaxant, a pain med (tramadol is common) and an antidepressant for brain chemistry...not that we are all depressed, well you get depressed from the pain but we are not depressives...we are low from the pain taking the life we knew.

OK.....stop nancy...just know that and supplements of Magnesium, B Complex and others are important. Mimi will tell you here that getting your Vit D level checked is important. We take Vit D to help as well.

Pacing activity as to not cross a line and then increase pain is big. Journal your days, that helps to find a triger and know what not to do together as it = pain.

I also ask people to buy a book called : FM and Chronic Myofascial Pain by Dr Devin Starlanyl and Copeland. It was 19.99 when I bought mine. It is an amazing survival manual to help you on a daily basis. Amazon.com has it. This doctor also has the disease.

Up to the right in discussion place Dr Pelligrino and see his gift to us while he was here. He too has the disease. Could you imagine going to a MD that knows exactly what you are saying. Also what to use that is the standard for now.Amazing gift.

I use a neurologist to care for me as I am CMP and not FM it is connected but not the same. I have no fog. I have trigger points and they are injected and I get up and running, but I have pain and I have muscle dysfunction and range of motion issues. I have been on the site for 15 years or so. Priceless to have a place to go and vent or talk about issues. Now a site to help another and show them some tools to be better.

Biggest change I made was with hydration with water and no crap in my mouth. I eat green veggies only, as they are packed with antioxidants and I am helping the body to heal.This is a tough disease because we are out of norm all differently. That even that it is Magnesium of how much for me as apposed to him....Vit D is at 12 Rx vit D for a bit and then how much will my body need to get to norm and maintain. The dosing is all different

WE ARE ALL DIFFERENT IN CHEMISTRY. That is what makes this so hard. I am so sorry you have joined the fmily but so happy you found us. You are going to learn and you can take control of so much of this. It is a disease that you have to be consistant and persistant with to get results. As of now this is all we have. Finding the physician champion you need is also a challenge but can be done.Don't go in with I hurt here, and here...you must go in with:OK I have found if I do this, it is better so I do that and then this makes it worse. I can't do this and I need help so I can do this. Make a journal of triggers and fixes to present to the doc. Show him what you are doing to HELP YOURSELF and where you need him to help.

It is not easy and remember WE ARE NEVER NOT IN PAIN.Our meds and therapy just lower it so we can have a life. You can do this. You can be a CHAMPION like some of us.

Hi,
Take a look at Dercums Disease. I'm convinced that some of us suffering with these painful lumps, also have this condition. Doctors need a disease to work with, especially when dealing with fibro patients. So many doctors just get tired of us complaining. They feel helpless to help us or don't believe us. I do all the research before seeing mine and have suggestions and tests I want to do. Seems to help.
Anyway, Dercums is real and while it may not be 'fixable', per se, it gives your doctor something to test for and you something to call it.
Good luck!View Thread

I have been diagnosed with FMS since I was 18 so 13 years or so
And I have had lumps but just recently they are becoming very bad
I have several in my head, which are getting worse
In my breast and have had to have several removed. I am going
In to my GP on Tuesday again with a new one on my panty line. I know she will just brush it off as usual and just remove it BUT I will
Now ask about the link to FMS
Thankfully I stumbled across this post.View Thread

Well....glad you are joining in the conversation now..yes..you have a VERY important point..and it is SOOOO hard to stand up and say..."No...diet and exercise won't fix this"....and neither will warm showers...now..they may all be good things to do...but that doesn't mean there isn't a name for what I have ...or that it isn't just an easy fix of exercising and showering...I think I got that advice, even after my diagnoses !

Anyway..so sorry you got the Lupus diagnoses..and I am so very glad you found a good rhumatologist..(hopefully) that will help you along this difficult path..

Please feel free to join in here anytime...and that goes to anyone out there just reading..we are glad to hear from you !

Nice weather here..sorry for all the cold the rest of you are dealing with...Spring shouldn't be too far away !

Had to spend last night with mom and dad, as the caregiver had to have root canal work...Oh Mimi...sounds similar..only she had an infection, multiple problems..sounded just awful..but hopefully feeling better today..

I never sleep well there..we have a baby monitor so I can make sure dad is not trying to get up at night..(don't want him having low blood pressure and falling over again..)..but that means that I hear all his little noises at night..and I don't sleep well..Also ..can't take my flexeril over there..as I can't be too much asleep when he calls..and that makes me realize how much I depend on that flexeril to get to sleep..

We did get my dad on hospice...and they did put him on Soma for constipation stuff..and that seems to help that..and they want him on methodone for pain...I am VERY nervous about that..so Nancy B...if you have any advice..please let me know ! Any narcotic pain reliever they have given him in the hospital has made him out of it..

Your rheumy should have done lots of bloodworm to rule out things like Lupus and MS. Mine put me through months of PT to see if it was some form of arthritis (which I too have). He took lots of X-rays to see if my most painful areas were arthritis. It took 15 months for my diagnosis, and I was lucky that the first med worked right away. Some people need months or trial and error to find effective meds.

Just because your doc did different tests doesn't mean you got bad treatment. Did you tell him about the diseases that run in your family, and did he test for them? Are the meds working? Are you following his advise for movement, diet, etc etc? Most important: are you feeling better?

Vitamin D, tips and resources, and of course this support group are all here for you. I wish you the best day - and the best weekend - you can possibly have!LouView Thread

Cory, I'm sure sorry your knees are so bad. The GCMSM you are taking can take up to 6 mo. to work! I have been on it for years--and so is my dog. If it is from arthritis, there is now an injection of synthetic lubricant. As we age the synovial fluid in all our joints thins out. I just mention this as one who has had life-long knee trouble, (started when I was 10). It's just another avenue you may care to investigate.

The dieting aspect was not something I was excited about but it truly has been such an amazing change for me! Prior to dieting, I didn't eat all that good. I binged a lot, not horribly, but my appetite was always weird so I would over-eat a lot and then starve myself. Dieting has really helped me to no longer binge. Before, my body was unable to recognize being full, so I would often gorge and over-eat. Now, I can actually feel myself getting full very quickly. And I know now that my body actually CANNOT handle a lot of food!! My body can seriously only HANDLE about 1200 calories a day, which makes sense because I am rather sedentary. Before, I was eating like 2000 calories a day. My system was so broken, so inflamed, so damaged and I kept shoveling food into it (also the type of food was bad which made things even worse) I think as a comfort thing. Like physically my body felt better, I had less pain, when my system was full. But when I would be TOO full, then I was feel like complete garbage. So now, I eat very NORMAL, if not very small portion sizes. And I only eat things that are making me MORE healthy. All of the junk we put in our bodies makes our FM worse. I focus on only eating things are are BENEFITTING my body - like fruits, vegetables, organic proteins - things that are FULL of good vitamins and nutrients. And I COMPLETELY STAY AWAY from anything that contains any chemicals!! If you can't pronounce ALL of the ingredients on the package then it is NOT HEALTHY for you. Stick with REAL FOOD. Seriously look into the Whole30 diet - it really explains how food can negatively effect for your body in a CHRONIC way!! The problems we have are CHRONIC. What causes chronic problems? Something that you do daily...ie...EATING. The food we put in our body is directly connect to triggers. HENSE why I COMPLETELY stay away from gluten. DO NOT EAT GLUTEN! It is NOT good for us! Our systems are so damaged and we CANNOT properly process it! Get off gluten and your IBS will automatically start to heal itself!

Gluten is the devil. I will never eat it on purpose again. It causes me SO MUCH PAIN from even the tiniest crumb. I HIGHLY suggest cutting it out of your life. YES, it is challenging to cut it out of your diet. Just like any other dietary restriction. But there are TONS of delicious gluten free options available nowadays. If you have Alid's near you (it's a discount grocery store), they sell TONS of delicious gluten free foods for super cheap! Eating gluten causes an instant reaction to your intestines. If I eat it my stomach SWELLS right up, I start to get back stomach pain, and then I feel like I want to barf for a day or two. Then, it finally comes out the other end which is usually a disaster. The trigger it sets off to your intestines radiates all throughout your body. Just stay away from it forever, seriously. You'll feel SO MUCH BETTER!

In all honesty though, I really could not commit to diet changes until I felt WELL enough. And that wasn't until about 2 months after starting acupuncture. After all of those treatments I finally felt OK enough to take on such a big task of overhauling your lifestyle. If you need help with dieting, let me know. But start with the Whole30 - check out their book "It all starts with food" it will help explain A LOT. After my 30 days, I added back in a little bit of dairy (some milk and a little bit of cheese every now and then) and some sugar (I love candy and chocolate). I only eat them on occasion though. I also have alcohol on occassion but it really bothers my intestines so I try not to (not just gluten free alcohol but ANY alchohol doesn't sit well with me anymore, I'm more of a 420 girl anyways!) My diet really only consists of fruits, vegetables, and proteins. That's all your body needs so that's all I eat!

Before I first started my Acupuncture journey, I read somewhere that FM is CURED in China from Acupuncture, dietary changes, and yoga/tai chi. I AM LIVING PROOF THAT IS TRUE!!!!!!!!!!View Thread

BTW just to keep you updated... I am scoped to have 3 more months of treatments until I am completely rid of EVERYTHING FM RELATED!!

As of right now, I am sitting here with virtually NO pain. I have been at about a 2-3 all week, which essentially feels like NOTHING. Other improvements I have had just this week is that my bowels have become COMPLETELY NORMAL! I have confidence that my intestines are finally starting to work as they should! Because of this, the pain I have in my head (head/temple/jaw/eyes/ears areas) is GONE!! I haven't had pain there all week. I think earlier in this post I stated that the head pain is caused from Intestinal inflammation - by having both of these symptoms start to disappear I am VERY confident in that!! Also, i have been sleeping GREAT! I get about 7.5-8 hours of great sleep every night. Also...a week or two ago I HAD A DREAM!! As in I was sleeping so deeply that I was able to dream!! It was incredible! I hadn't had a dream since my FM started over 3 years ago because I was never able to get deep enough sleep!! Things keep continuing to improve!! I can't wait to see what this week brings! View Thread

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